Braftovi and Mektovi, side effects and timings of tablets experience please.

Hi Reid.

Ive been on this combination treatment for about a year i would say.  I do respond well to as the scans show. I had it in all organs which is now showing  nor much. I did have the tumour in the brain re occur about 3 weeks ago, but I was told  when receiving second lot of gamma knife (approx a year aoart) that the drug doesn't treat the brain. 

I do also suffer from uvitous which us controlled on and off steroid drops. I also have a catarax I'm told this is caused from being on previous steroids I was on for quite a while treating issues from having the immunotherapy treatment that didn't work. 

Over all this treatment seems to be working for now. 

I can deal with the issues. 

Do you mind me asking your age? If not then that's fine of course. 

It just intrigues me to find people that are in the same situation and of the same age etc, although I realise we are all in the same boat what ever age etc. 

I'm 39 this year and I'm always searching for the unknown answers to how long!

I ask the same question to the consultants every 3 months as if they gonna have the magic answer . 

I hope this post helps. 

Its defo warming to know there are others dealing with same. 

Hello, I’m 40

glad to hear your responding well , I seem to be too . Im due a scan soon so hopefully get some positive news from that ! 

Sorry to hear you’ve been in hospital hope you are feeling better . I’m finding night time better , only because I had to take steroids at the minute so it’s less to take in one go !

thanks Reid06, i'm back on encorafenib and binimetinib, since my Wednesday review. ive plumped for the bulk of the tablets in the morning hoping to cut down on water in the evening, and my stomach feeling more disturbed in the evenings. my team plan a scan in 3 months as normal and authorise just one month of tablets at a time. at some point they may want to swop me to ipilumamab but Im not well enough at the moment and we have to decide when and if its the right move for me. My scan results are mixed but some good points so they are able to restart. I'm over 20 twenty years older than you two so you should be stronger for things so good luck Reid06 and JT legend.

KT. I hope you manage to find a good balance with the meds. It seems to be a juggling act and often go round in circles. Fingers crossed for your next scan!! I uave one in a month or 2. Will be first since the gamma knife treatment . 

Reid, with the steroid drops for uvitous, do you take them everyday or take them as and when needed. 

I find I stop and start with them as I feel it flares up as taking eye drops everyday through the day was just not practical if my eyes felt OK? 

Take care  

Reid06 hope your ok? appreciate this post was circa 2 yrs ago but my wife is stage 4 melanoma .. immunotherapy stopped working so started on Brav / Mek tablets daily. She’s been on a month and just got treatment for uveitis … can I ask did yours clear up? My wife is past herself incase  her cancer treatment is stopped

Hi KTathome 

I am currently taking Dab and Tram for stage 4 with a great response that has seen my cancer reduce to not noticeable on my scans. The side effects I have is fatigue and sore joints but otherwise no major issues with them I take both in the morning and then the Dab on its own in the evening. I also take Prednisolone to try and counter these side effects. It has some effect and does help but this in its self comes with other side effects. 

Hope this helps. 

Greg

I take 3 Mektovi around 630am and 630pm daily; then I take 6 Braftovi at lunchtime.  Not sure if this is right but seems to be working for me, ie not feeling any major side effects, definitely feel tired putting that down to my body changing to fight the cancer with the support of the tablets.

Hi Sean

My partner was taking Mektovi and Braftovi last year. His dosage was 12 hours apart, with morning tablets all taken at the same time, then the evening 3 tablets 12 hours after. I would check with your cancer nurse on how it was explained your dose should be taken.

My partner had fatigue and aching & painful  joints with this treatment.

Hope all goes well

Margyy

thanks I will check on Friday when i am back, my understanding was that the Mektovi should be 12 hrs apart but the Braftovi was anytime